The Centers for Disease Control and Prevention (CDC) published
several articles on a small but costly research endeavor in a new
and fairly unknown medical journal called Pharmacogenetics.
Along with a press briefing from the U.S.'s principal agency for
protecting the health and safety of all Americans, they deliberately
gave out misleading and disturbing statements that were carried by
the media through the country. While the research was interesting,
it was far from earth shattering but it was their own opinions on it
that mislead the national media. We weren't the only ones that
thought so as Science (May 5, 2006) chastised the CDC for
shoddy and "incomplete" research. Of course, Science also
finds "CFS" controversial since "The lack of a specific diagnostic
criteria... has led to debate over whether the cause could be an
infectious agent, psychiatric, or something else..." Yet even their
own article was in error as they mentioned the $12.9 million that
the CDC was supposed to spend on CFIDS/ME and didn't led to a
research director who "lost his job." No, Dr. Brian Mahy
was merely reassigned in the CDC while Dr. William Reeves pretended
to be a hero.

Four small groups found five single nucleotide polymorphisms (SNPS)
in two or three genes which are coded for the glucocorticoid
receptor. They zero in on serotonin and trytophan hydroxylase which
are regulated by the HPA axis (hypothalamus, pituary, adrenal)
located in the brain. Of course, we've all heard, for many years,
of the disregulation of the HPA axis in CFIDS/ME but the director of
the CDC, Dr. Julie Gerberding, said, "It really is the first
credible evidence of a biological basis for chronic fatigue syndrome
that's come out in 14 articles simultaneously." She linked this
with "escalating science" and the Human Genome Project since they
identified "specific genes and gene activities associated with
people who have chronic fatigue syndrome." Does this mean that the
CDC's director is unaware of the gene research already done in the
past including a gene found in CFIDS/ME by her own agency years ago
that was one of the same genes expressed in Huntington's Disease?
Of course, that was published in another little known medical
journal and never referred to again by the CDC. The National CFIDS
Foundation, however, brought the information forward in their
newsletter. Is she also unaware of the gene research findings of
Dr. John Gow and Dr. Jonathan Kerr who found much more
and found it in far more than the CDC's 27 patients? Dr. Gow not
only used rtPCR but also looked at the proteins that encode them
which went much further than the CDC work. Is she unaware of a
wealth of "credible evidence of a biological basis" done by the late
Dr. David Streeten that tied in glucocorticoids? Or the
"credible" work by Dr. Robert Suhadolnik showing an
up-regulated antiviral pathway (2-5A RNase-L) or the more recent
work by Dr. Yoshitsugi Hokama finding the disease produces a
toxin in the body that was found, by laboratory standards, to be in
100% of all patients? Anthony Komaroff,M.D. recently stated
that there were now over 2,000 papers demonstrating "unequivocally"
that CFIDS/ME was an organic disorder. Why wouldn't Dr. Gerberding
know this?

Dr. William Reeves, in the press briefing, began with a
blatant lie: "The illness was first recognized in the late '80's."
He knows full well that the "illness" was first mentioned in a
medical journal in the U.S. in the 1930's when it was called "benign
poliomyelitis." It was recognized by the World Health Organization
(WHO) decades before the CDC had to rename the erroneous name that
the National Institutes of Health (NIH) chose for it (Chronic
Epstein-Barr Virus). Reeves continued to obfuscate when he said,
"For the first time ever, we have documented that people with CFS
have certain genes that are related to those parts of brain activity
that mediate the stress response." We already knew that if we were
aware of the work done in Europe and they also found many other
genes expressed as well. And, no, you aren't born with defective
genes. The disease does the dirty work on them. We've known that
patients are in a fight or flight mode because something has
attacked their immune systems which leaves part of it highly
up-regulated while another part is down-regulated. And others have
found a lot more about genes including one that is expressed that
can only up-regulated by a viral cause! When you are sick, your
genes change. Some of the newer papers on what the CDC found point,
again, to corticol problems such as one published earlier this year
by Yoshuichi, Farkas & Natelson entitled "Patients with chronic
fatigue syndrome have reduced absolute corticol blood flow" (Clin
Physiol Funch Imaging, 2006). Another of many was published
along the same lines in 2003 using PET (positron emission
tomography) scans to observe brain metabolism (J Neural Neurosrg
Psychiatry, 74) by German researchers ("Observer independent
analysis of cerebral glucose metabolism in patients with chronic
fatigue syndrome"). And no press conferences were held or needed to
information.

Did these 14 articles the CDC publish clarify or confuse? The
latter seemed obvious due to the spin put on them by the CDC. At
the CDC press conference on the publications, Dr. Suzanne Vernon
was asked by Mike Stobbe from the Associated Press about Dr. Kerr's
gene reports "from Glaxo and St. George's." Dr. Vernon's answer was
so convoluted that Mike said, "I'm sorry. I don't understand" and
he again asked if the CDC had "found genes that had not been
associated with CFS." Again, Dr. Vernon answered with a non-answer
saying "There's differences in the actual genetic make-up --- the
DNA code, that could explain the differences in the gene activity."
Did the CDC find something not found by Dr. Kerr and others? It was
never answered. Naturally, most reporters interpreted her answer to
mean that PWC/MEs (patients with CFIDS/ME) have a genetic
susceptibility to the disease which the CDC has NOT proven nor is it
correct! Dr. Vernon is not unaware of this. It was she, after all,
who found the gene associated with Huntington's Disease that she
refused to mention and conveniently ignored. This would not, after
all, fit in with the CDC's push to have this a simple stress
disorder that is shunned and ignored by researchers. While Dr.
Kerr's patients were from a "CFS clinic", the CDC spent a total of
two days and found, in the end, just 59 patients that fit the 1994
Fukuda criteria that many world-wide have previously criticized as
faulty. Kerr, by the way, is expanding his study to 1,000 patients
and the National CFIDS Foundation is helping to have some citizens
from the US diagnosed with CFS to be included in this expanded
study.

The 2-day study cost was, according to Dr. William Reeves,
"about $2 million." Could the CDC's discovery be used clinically,
wondered Joanne Silberner (National Public Radio)? Dr.
Vernon, after the question was repeated, said, "Oh, absolutely.
Absolutely." "How soon?" asked Ms. Silberner. "Hopefully, as soon
as possible," answered Dr. Vernon using a well known political
answer/non-answer. Rick Weiss of The Washington Post
complained that the CDC had not made the 14 papers accessible to the
reporters before the press conference, calling the CDC
"irresponsible." Dr. Reeves never addressed the criticism. We
agree that the CDC has been and continues to be "irresponsible."

Jennifer Corbett from Dow-Jones admitted "ignorance on
chronic fatigue" and asked if it was "a real condition." Dr. Reeves
never corrected her for calling a disease by a symptom since his own
agency trivialized it by naming it after just one symptom. He said,
"One of the most common stereotypes is that this is a bunch of
hysterical upper-class professional white women who are seeing
physicians and have a mass hysteria." He never admitted that his
own agency helped to promote that stereotype. Casia Tsaseka
(Jointandbone.org) asked if CFS was "a legitimate disease" or "a
syndrome." Dr. Reeves said, "I would say that clearly, in the last
five years, yeah, there is a, you know, a much improved recognition,
overall, of the illness...CFS is not a simple disease." Last five
years? Why? Because of the excellent research on the ciguatera
epitope, STAT1 and gene research done by others? Dr. Reeves,
answering a question from Helen Pearson (Nature
Magazine) explained that the five SNPS found in just two genes
clearly "distinguished between the fatigued groups." Remember, the
CDC, in all its wisdom (?), is still studying "fatigued groups." So
now they're down to two genes? Rick Weiss wasn't satisfied and
asked for numbers. Dr. Reeves said, "Actually, I can't give you
those numbers..." but Weiss persisted "But are they up or down, or
what direction? Are they more active? Less active?" Dr. Vernon, at
last, admitted, "These are actually genetic changes" and Dr. Reeves
added "Some expression profiles were found...We're not saying yes, I
have a marker..." Aha, so "changes" mean your genes weren't faulty
from birth. But, of course, most reporters, due to the vague
answers, reported it erroneously suggesting otherwise.

And, yes, the papers bring in the dark side of this by
mentioning allostatic loads which is how one adapts to stress.
John Rikert (Congress Quarterly) asked if this could be
associated with environmental factors. "No," said Dr. Reeves,
"...as people experience stress, and that can be childhood abuse, it
can be childhood infections, it can be multiple injuries --- all the
stresses that we experience...determine how your allostatic load may
accumulate..." How does this fit in, we wondered, with the gene
expression found by Dr. Kerr that pointed to a virus? The CDC's
seemingly deliberate attempt to undermine and discredit as well as
bewilder was seen in the subsequent articles and news reports
carried from coast to coast in the country. After all, a media
release from the CDC had the headline, "Genetic & Environmental
Factors Impact CFS Patients." The source of this release was from
an announcement issued from the medical journal, itself! CFIDS/ME
patients are "not able to adapt to the many challenges and stresses
encountered through life." Even the CFIDS Association of America
gave their "Part 1 of 4" article on stress in their spring issue. So
we're sick because we have an inability to handle everyday stress?
That's how this was reported! The Associated Press reported
"Genetics and Stress are Found Linked to Fatigue Disorder." They
reported that "Dr. Reeves said the study demonstrated that people
with chronic fatigue syndrome were unable to deal with everyday
challenges and adversities including injuries, illness, divorce, and
stressful jobs."

So we're wimps? Even the small kids who get this? Those five
year olds just couldn't handle their job stress or their divorces
from their spouses? For all his questions, Mike Stobbes said the
illness "appears to result from something in people's genetic makeup
that reduces their ability to deal with physical and psychological
stress." Rick Weiss reported "that finding strengthens the case
that some people are born with a predisposition to the condition."
Although the genes of PWC/MEs (patients with CFIDS/Myalgic
Encephalomyelitis) are not disrupted at birth, the CDC's own press
release disputed this scientific fact! When commenting on this
slanted hype, Derek Enlander, M.D., M.R.C.S., L.R.C.P., who
is working with Dr. Johathan Kerr on his genetic studies,
said "We will not make a statement that the genome makes a patient
more liable to stress as the testing cannot prove or disprove such a
thought...Reeves has warped this genetic study. It is, indeed,
outrageous." Commenting further, he said, "The Journal
Pharmacogenomics, a small lesser known medical journal, published a
series of 14 articles...reprints were difficult to get but my Mount
Sinai Medical School Library obtained them for me...unfortunately,
most of the 'CFS' patients did not conform to the standard Fuduka
criteria...the genome testing method was technically flawed. the
results were not confirmed with tagman PCR...It claimed that the
discovered genetic aberration showed a predisposition of CFS
patients in stress management. A quantum leap, as was the statement
'gene signature predicting response to CBT'. However, this was in
line with Reeves previous notion that there was a psych link in
CFS...I disagree."

There were better and worse reports. Medical News Today
reported it a bit more accurately when they wrote, "CFS is also
known as M.E.," but they also wrote that many other illnesses and
conditions , which are often treatable, make a patient feel chronic
fatigue such as..." and they went on to list 18 exclusions which
included "myalgic encephalomyelitis!" If you wanted to learn more,
they had a link to the CFIDS Association of America (CAA) who found
this clinical study exciting. But, after all, the CAA did not list
the discovery of the up-regulated RNase-L pathway or the ciguatera
epitope on their recent list of their "Top Ten Discoveries." By the
time you read this, the CDC and CAA will have embarked on a $4
million PR campaign. Or did it already? Amanda Gardner wrote
in HealthDay that the work is "strongly suggesting a genetic
basis for the condition." So CFS is not even a "syndrome" but a
"condition." She ends by saying "More information on chronic
fatigue syndrome, visit the CFIDS Association of America." Sure
seems like the kick-off for their PR campaign to us. It makes us
feel this was quite calculated and we've found a more than a few
researchers that agree with us lowly patients. One, Martin L.
Pall, Ph.D., Professor of Biochemistry and Basic Medical
Sciences, wrote, "There was a time when scientists would be run out
of town for twisting or ignoring the facts. Now, much of it is just
PR, you get the press coverage so it does not make any difference
whether you have the science behind you...In the case of the CDC, it
appears that they figure they will do better the next time Congress
makes up a budget by making such claims."

Remember the days when they told kids they would be protected from
a nuclear bomb if they hid beneath their wooden desks at school?
Remember when they told everyone that stress caused CFIDS/ME? Did
you ever hear anyone admit that what they said was wrong? We're not
expecting a retraction of either any day soon from either the CDC or
the CAA. William Reeves has spent many years refusing to get the
CDC to produce the actual prevalence on this epidemic and when other
studies were completed, they had to adjust their own numbers
upward. In 1996, Reeves refused to be interviewed for Prime Time
Live but stated, via a telephone conversation, that there were
"no cluster outbreaks" and that CFIDS/ME was "not caused by a
virus." He has told many for years that the illness has no actual
cognitive problems and is not serious yet he wrote to the late
Joan Irvine, a patient, that it would be prudent not to donate
blood. He was not interested in articles that a researcher tried to
give him proving immune dysfunction in ME/CFIDS and in open federal
meetings was downright rude in discussing patients although the
Department of Health and Human Services refused to censure him for
his vile remarks. Much of this history is documented in Osler's
Web by Hillary Johnson. Do we expect the CDC to do an
about-face because science has proved Billy wrong? Not anytime
soon. We never bought the hype put out by another organization that
he was a hero and history keeps proving us right again and again.

Ed. Note: A full page ad in USA Today showed more groups than just
the NCF have their problems with the CDC. The National Autism
Association, Generation REscue, A-Champ, NoMercury, Moms Against
Mercury and AutismOne accuses the CDC, based on FOIA Act e-mails
form the CDC and FDA, of concealing data. They are asking for
criminal charges to be brought against the officials involved. Dr.
Mercola labeled the CDC the Centers for Deceit Control when
reporting on this online.